I am about to "celebrate" the six year anniversary of my Parkinson's disease diagnosis. I currently take five 25/100 Carbidopa Levodopa tablets per day, usually around 9:00 a.m., noon, 3:00 p.m., 6:00 p.m., and 9:00 p.m. although timing varies slightly from day to day. Lately, I have noticed that I don't quite make it 3 hours without feeling slightly "off." It's tolerable, but I'm thinking of asking my neurologist whether I should increase my daily dose to six pills a day.
Could those of you who have been diagnosed for 5 to 10 years let me know your daily Carbidopa levodopa intake and let me know if you take any other medications as well? I should add that I am 61 years old and I'm in reasonably good health other than the PD. I am reluctant to increase my dose, but I'm reminded of how afraid I was to even start taking c/l in the beginning and how beneficial it has been for me. I don't want "Levodopa phobia" to lead to bad decisions, but I'm also afraid of dyskinesia and other long-term effects of increased medication.
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jimcaster
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9 years since diagnosis. I had been taking 2 and 1/2 doses of 25/100 C/L ER daily, consistently, for years. Plus selegiline 5 mg in the morning. Added entacapone 200 mg twice daily about a year ago. From what I gather this is an atypically low dosage.
Since the citicoline disaster it has varied. Currently at about 3 and 1/2 doses of 25/100 C/L ER daily.
Thank you for all the info. I didn't know, must have missed it. Took it for a while, got a headache each morning and stopped.Can't say that I noticed a need to increase carb/levo. However now I'm up to 9 pills a day, some time I take one, other take one and a half and also spread out during night.
Like Dr. Mischley says "you need what you need", take as many as it makes you feel better/functional. I am only 2.5 years into it, and with my movement disorder specialist advice i am on 2 x 25/100 C/L 4 times daily. From what i gather on this forum, it is fairly high dose. Yet, still feel like s...t most of the time. No dyskinesia. Everyone is different, there's no universal medication regime that works for everyone. Take what makes you feel good and enjoy every day, because "today is the best day of the rest of your life", leave nothing for tomorrow.
Hi Jim, Well I’m 11-12 years in and had DBS two years ago. Before DBS I was on about 6 cd/ld, Azilect and Comtan. After DBS , I was on about 4 cd/ld and nothing else. However , I’m still struggling to try to find my sweet spot with my device and meds. Just last week we added Comtan back in , meds are wearing off 2-3 hours. So far the DBS has only helped with my dystonia. I do have dyskinesia but it’s better then freezing and not being able to move. I can no longer run my marathons and ultra runs , I barely can do 3 miles but I still try. I wish I didn’t have DBS because with just meds , I knew my body and what it needed. Sorry I’m a bit of a negative Nelly, but I am greatful. I’m 60 years old and I think I’m in reasonable good shape but not as I was. You can always just try 1/2 pill more and see how that works for you. I’m glad to hear you are doing well. Karen
Thanks for your honesty. DBS is probably not for everyone. But I've heard it may take quite some time to get to that sweet spot with it. I pray you find it and get benefit. God Bless.
Can you explain please. How much Mucuna and how many times daily. Do you alternate Mucuna with c/l. I am currently trying both so your advise would help
Hi Jim, my husband is 61 also. PD dx age 37 yrs. Taking c/l since 2006. 16 Sinemet a day total, 4 doses every 4.5 hrs approx...200/50 x 12 per day and 100/25 x 4 per day. Cimtan x 1 at each dose. No dyskinesias from normal day. But if has under dosed OR over dosed then can start up. Extra pill sometimes for workouts can sometimes be too much. Stress from an argument or intense single focus concentration like playing an Xbox game can make it terrible. Overall he's pretty darn healthy except for PD.. everyone is do different but as AGH1966 says, try upping and sticking with a few days to a week see how it goes.
I am 58 and 14 years since diagnosis (and beginning medication). I take three quarters of a 200/50 Madopar 6 times a day with a Comtan tablet. Azilect in the morning and Symmetrel (Amantadine) twice daily.
I am currently being treated for Sibo and finding that I am needing less medication
Great name arty-fact . ...we are usually looking for another area of clumping or disturbance that caused our pd other than the brain. Possibly the stomach or intestines.
I find it interesting that you need less pd meds as you are being treated for small intestinal bacterial overgrowth. If you don't mind, what is that being treated with and thanks.
I have had lifelong problems with constipation and have finally been diagnosed with Methane SIBO or more precisely Intestinal Methanogen Overgrowth - IMO.
I’m on the antibiotics Neomycin and Rifaximin and I think it might be a bit of a game changer for my health.
Sorry about the lifelong constipation, but it seems like you're getting a break with the 2 antibiotics. Always a little curious when pd'ers symptoms improve when bacteria is killed or can't multiply as the antibiotics do their thing.
If you can, let us know how your pd symptoms fare while on them.
The question seems too general, Jim. As you know, everyone with Parkinson's disease responds differently to medication. For example, women may require only half the medication compared to men due to gender differences in Levodopa Pharmacokinetics.
There are hundreds of other variables that can play a role in medication response. I understand that you are looking for guidance on how others in a similar situation manage their medication, but it's important to consider your specific needs.
The significant differences in medication response can be seen in the data used to create the following graph, which was found in the following research article:
Although it concerns here young-onset Parkinson's disease, you’re on track. It appears that you are still well below the average of 750mg after 6 years. Good luck! 🍀
I’m 10+ years into my PD journey and I take, on average, less than 1 C/L tablet per day in split doses. I take 1/4 tab of Sinemet with 2 NOW brand DopaMucuna every 3 hours mostly just in the morning. I don’t take any other medication.
In the morning I do not have any off time if I stick to dosing every 2-1/2 to 3 hours.
After my last dose, usually around 12:00, I don't have any negative effects until around 4:00 when I get slight dyskinesia for 1-2 hours. It's not enough to cause me any problems as I am still active and moving around. BUT around 6 hours after my last dose, I have about 1 hour of EXTREME fatigue and feel like I could fall asleep standing up so I plan accordingly. I’m not able to sleep even though i feel tired so I'll read or meditate or listen to podcasts.Then within about 1 hour, I'm back up and moving around doing yoga or stretching before going to bed. It's the best time of the day for me because I feel normal when the C/L is out of my system. And I sleep pretty well
So, you're probably wondering why I take it at all. In the morning when I first get up, I move ok but I gradually start moving slower. And mornings are when I walk, go to gym or errands so I need the dopamine boost.
I am diagnosed 8hrs and am taking 15x 48.75/195 Rytary split into 5 doses of 3 pills every 4hrs. I had DBS surgery last year that helped my dystonia and levodopa induced dyskinesia. I have recently been adding in a 400mg mucuna pill to help with some off periods.
From the responses here Jim there is a wide range of doses and meds people are taking. Sounds like you are managing very well with your PD journey and the meds.
My husband dx 9 years this summer but Neuro thinks he’s had it for about 14 years! Took meds after dx about 3 x 125mgs of Madopar for several years with some side effects but after 4 years and increasing to 4 x125 the dreaded dyskinesias and dystonia arrived.
We changed Neuro and he added in Rasagaline and Amantadine. All went well for a while but gradually dyskinesias returned.
Still only 2 - 3 x125 Madopar pills per day, my husband sometimes takes less but never more. Neuro added in 2 mg Neupro patch which hasn’t made much difference. My husband doesn’t have distinct on and off times and frequently forgets to take his pills.
To help with dyskinesias he started with Dr Mishleys fish oil and CDP Citicoline although less Citicoline than she recommends. ( noted Park Bear the issues you wrote about) It is seemingly making a difference with dyskinesia, they aren’t appearing as much. As always with PD it’s a work, very much in progress.
Jim, how impacting is your diet on the effectiveness of your meds? Do you follow the recommendation of at least 2 hours after eating protein? I seem to be very sensitive and meds will not be nearly as effective if I don't wait at least 2 hours and depending could take 3-4. just curious your experience. john
I try to wait two hours after eating protein, but I'm not very diligent about it. I haven't noticed a great deal of difference if I wait an hour or if I wait 2 hours but I generally wait at least 1 hour.
Hi Jim, I have had PD for close to 5 years and am on the following which work very well as long as I stick to the schedule even when flying long haul --a) 2 x 25/100 Madopar at 8am,12:30pm and 5pm which will usually last until around9:30pm.b) 1 x 25/100mg Sinemet at 8:30pm . c) 1 x50mg Opicapone at 10:30pm. These two help me move a bit easier when I get up during the night. d) 1 x 1gm Rasagiline at 8am with the Madopar. I also take a couple of Tables for my BP. I'm seeing my neurology prof later this month for my annual 'MOT' and I'll let you know if anything changes. I'll be 78 later this year and in good shape. I exercise daily which definitely helps my PD. Cheers.
Jim, it really does sound like you are doing well my friend. Reading everyone’s posts makes me feel okay with my regimen. I try to remember that it is a progressive disease and keep moving the best I can. I do notice when I go to my neuro his answer is to add another pill. I do resist on some of them. Take care. Karen
Hi Jim, I am 10 years past diagnosis and I am taking Rasagiline and 4 x 200/50 mg levo/carb (CR - continuous release). The last one I take around 2 am for sleep; when I wake up to go, I take it. I am one of the lucky ones and I have no dyskinesia’s from the medicine. My neurologist gave me some 100/10’s for high intensity days like full rounds of golf. I also pay close attention to diet: intermittent fasting, no dairy and watch protein intake around medications. Also, I take-in very little sugar.
I know everyone is different, so I have been my own experiment and my neurologist has supported me. This is the first time I have recognized the value of my neurologist. Huh?
Hi, I actually add a pill when I start feeling off and because it is instant release, I can stave-off the off time until my next 200/50 dose time comes.
Hi Jim. I was diagnosed 20 yrs ago at the age of 46. I currently take 6-7 C/L’s a day along with 2 Amantadine and 1 Azilect. I do have dyskinesia but it’s not real bad. The C/L sometimes lasts close to 4 hrs recently 3 - 3 1/2 hrs. The doctor told me to increase the C/L to 1 1/2 per dose but I didn’t see a lot of difference so I went back to 1. My thinking is less is better. Just recently my tremors have gotten worse so I’m contemplating DBS. Exercise helps a lot. 🥊
I am 71 years old and have been diagnosed PD for 5 years. Now, I take 100/25 Sinemet 4 pills a day as 7:30am, 11:30am, 3:30pm and 7:30pm. I also take Amantadine 100mg and Rasagiline 0.5mg per day. I have dystonia and dyskinesia, also, have bad "off time", but, my Neurologist Doctor told me it is better don't increase the dose, that would make your body dependson the med more, and worsen Dyskinesia,. She told me that Rasagiline should make the "on time " longer. I just started try Rasagiline about two weeks, seems the "on time" is longer about 15 to20 minutes.
I take one in the morning with 2 Now dopa Mucona supplements. Then the rest of the day I take 3 dopa muconas 2x more during the day. I was scared of taking carbadopa levadopa too. I was diagnosed 2017, but had it way before that. Good luck.
Hi Jim, I am 67 and dx'd in 2018 but in hindsight had symptoms for many yrs. Worked my way up to 6 C/L 25/100s ER last year to address increased and stronger tremors in right arm/hand. At 6 doses per day, I acted out my dreams even launching myself headfirst into the bed headboard...ouch! Dropped back down to 4 per day and acting out dreams stopped, but tremors were worrisome when stressed causing more stress. Had focused ultrasound (FUS) in January '24, and tremor 100% gone. Feel the need for C/L is diminished as I no longer get the signal from tremor on-set. Currently trying 3-4 doses/day. I take my first two doses with only coffee/almond milk and a banana to get loaded up on C/L before I have first full serving of protein. Have been gluten free and dairy free except cheese for over 5 years and am active physically.
Excellent! Where did you have the fus procedure done and what type of FUS procedure was it? I do not have a resting tremor and am particularly interested in Palladiothalamic Tractotomy (PTT) which was being performed by the Sonimodul clinic in Switzerland.
Yes, very sad. However, it still seems as if the overwhelming majority of patients report back favorably about Sonimodul. Dr Jeanmonod has retired and closed the clinic. However, I believe Dr Gallay will be opening a new Clinic soon.
Hi Jim, Nine years since dx, now on 3 c/l 25-100 per day, Rasagiline, and recently added Comtan taken with the c/l, plus NAC. Supplements include fish oil, B1, D3, citicholine. magnesium, and lions mane mushroom. I do have some dyskinesia on and off but so far the Comtan is significantly reducing the off times when every movement feels like swimming through Jello.
Going to throw my experience in here, to serve as a reference point for those whom it may interest.
My spouse first visited the neurologist in May 2017 and carried a tentative diagnosis of PD until April 2018, when she was stared on Sinemet 25/100, three times a day.
Switched to DopaBoost in June 2019 and then a mixture of DopaBoost and Sinemet keeping the Levodopa amount at 300 mg per day till mid 2022. Then upped the dose to 400 mg per day. She had slowed to a crawl: this caretaker made the call.
She retired a year ago but still takes 400mg Levodopa in three doses. We are on generic levodopa at this time. Cost has become more of a factor.
No sudden sickness, no unaccountable sudden high pressure, no huge mood swings, no longer hyper-anxious, all symptoms early in the illness. Still slow, stiff and a little bit shaky when anxious.
But I count my blessings and have made a strong commitment to what I call ‘a vegetable centered high fat diet’, a ton-load of supplements and a 30 minute hot sun walk five (5) times per week
Jim: I highly recommend
(1) Vitamin C/Quercetin blend with every dose of Levodopa for better absorption.
(2) B1 sublingual (100mg) and Niacin (flush) starting at 100mg and Magnesium (100mg) if your energy is sagging. When this is missing my spouse becomes ‘unplugged’.
Trying to keep to 400mg of Levodopa per day.
Finally, no need to visit then neurologist when I have this on-line community. (Can walk into any pharmacy and get my Levodopa without a prescription. Yup!)
Jim, many thanks for your contributions over the years. Wishing you the best ✨✌🏾✨
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